I understood it the way that they are looking into tranmission by air or start to look. But they higlighted that till now no retrovirus thats behaving that way.
Did anyone catch the details why the wpi is opening a new lab? The old one seems (safety / security reasons) not good enough for some tests.
Also it seems that CFS caretakers seem to tend to be positiv for MLVs? But not showing ilness sysmpthoms.

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I heard the part about the caretakers and to add to it wasn't there verbage that indicated that caretakers had higher viral loads or antibody counts in some cases than the patient?

I got the impression that in her talk she concentrated on the aspects of her XMRV work which were relevant to a pathogens and the blood supply meeting.
Wasnt she talking about new assays they were developing to detect the whole range of (X/P)MLVs which could presumably be used to screen blood?

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She referenced several people that she was working in conjunction with when referring to this high throuhput assay, but i didn't catch whether or not it had anything to do with BWG though?

Both Judy Mikovits and Ian Lipkin presented at this webinar. Lipkin's slides were not available, so there was no visual aid - but his presentation was on hunting pathogens, not XMRV specific. Judy was talking about XMRV detection and disease association.

These are taken from my hastily typed notes. Any errors are mine, and I cannot guarantee 100% accuracy. I have also had to interpret some of it, so I may have introduce bias - I hope not, but there is no substitute for listening to it or a word for word transcript.

Lipkin

Lipkin reported on intestinal biopsies in autism spectrum distorder, and they are finding a deficiency in enzymes for the metabolism and transport of sugars. Because of sugar alterations this may result in the dysbiosis that is frequently seen.

Lipkin was asked something like five questions, four were directly or indirectly about XMRV. He did not give answers that are very relevant to us, except for the upcoming study on XMRV. Three labs have been met with and had an agreed plan, the same for six clinicians. The hold up has been getting approvals, especially from Stanford and Harvard - but they should be ready to go soon.

Mikovits

Mikovits covered a lot of ground. Much of it is well known and I shall not report it again. I will however touch on the high points of the anti-contamination findings, even if is already well known.

1. They have measured high levels viral proteins from patients.

2. 30% of ME/CFS patients have two strains of viruses.

3. APOBEC3G induces G to A hypermutation, but while this mutates the viral RNA, the resulting amino acid sequence is frequently unaltered, and the virus can still be transmitted. APOBEC3G just reduces the viral load.

5. All 60 cell lines at the WPI have been tested for XMRV and are not contaminated.

6. Something Lipkin had also noticed, copathogens can increase severity.

7. Patient contacts including caretakers have higher risk of XMRV so this might be considered as a screening criteria for blood donations.

8. A question about XMRV transmission noted that an implication of CROI is that XMRV might be airborne. This is being investigated, but is not proven.

9. Mikovits is talking to Dr. Lerner about XMRV and herpes virus interactions.

10. Mikovits describes ME/CFS as an Aquired Immune Deficiency.

11. A new high security lab may enable research they have not been able to do so far.

12. It was confirmed that Chronix have indeed claimed to have found fully integrated XMRV in ME/CFS, including flanking DNA on both sides of the virus.

13. Pathogenicity is not proven. However, it is suspected that antivirual methylation might be removed by epigenetic factors including those induced by the virus itself.

The rest of the presentation was not of much relevance to ME/CFS, but there was a long presentation on babesia which might be of interest to some. This is still ongoing, but I thought I would post as I doubt much of importance to us will be said in the remainder.

Caretakers? I dont remember anything about caretakers - maybe because its a term we dont really use in England in this context. Caretakers polish floors in schools and put away chairs.
I remember Mikovits said that she had shown that XMRV is a human infection because she had shown that it was mutated by APOBEC in the bloosd cells - plus all the antibodies to MLVs she had found in her patients (not just XMRV antibodies)
Please tell me this talk will be available on the forum - I didnt take notes because I was sure I would be able to listen to it again!

One interesting answer that Lipkin gave to the questions - he said the patients selected for their study would be selected to fit ALL the clinical criteria, and that they would go even further and have experienced clinicians' input on the selection, so that they would be most likely to get the patients with "highest risk" of having infectious disease.

"Caretakers" = "carers" if you speak British English. Usually in American English we call them "caregivers." Dr. Mikovits didn't refer to caregivers per se, she talked about doctors and nurses being "contact controls" who often test positive (I *think* that's what she said) but don't express disease.

I see lots of problems here with people catching exactly what she said, because she was talking much, much too fast. That's a bad thing in public speaking; not only does it reduce audience comprehension but it tends to project less confidence and inspire less confidence in listeners, regardless of whether the person speaking is actually credible or not. Frustrating.

I think Lipkin said regarding using all the definitions that they will be studying those patients who most likely have an infectious "cause".

I suspect that Dr. Mikovits's rapid speech does communicate well with her scientific peers and audience here, but like you, my ability to track and comprehend all she said was hardly 100%. I still do not know what DNA methylation is, for instance, and feel that I should.

Darned ME/CFS! I pre-registered for this, had it on my calendar and all, then this morning I did one of those CRASH - Timberrr! things with flu-like symptoms laying me out. Woke up hours later, all foggy and fevery, and realized I'd missed the webinar. Expletives!

I think Lipkin said regarding using all the definitions that they will be studying those patients who most likely have an infectious "cause".

Sing

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From the CAA FB Page:

"Question submitted by another participant: Will the study use the Canadian criteria?

Dr. Lipkin's answer: The criteria we're using are very complex. They include all criteria published for CFS, plus additiional criteria established by the clinicians and laboratorians to identify group with the highest risk for an infectious agent."

I think Lipkin said regarding using all the definitions that they will be studying those patients who most likely have an infectious "cause".

I suspect that Dr. Mikovits's rapid speech does communicate well with her scientific peers and audience here, but like you, my ability to track and comprehend all she said was hardly 100%. I still do not know what DNA methylation is, for instance, and feel that I should.

Sing

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I did not see the presentation (didn't know it was on or that it would be today! but had an appointment anyway and could not have made it.... thank you so much Alex and everyone for notes and comments, and thanks Anne_likes_red for the link to the slides), but between me and Google, it looks like these conditions:

DNA methylation is "epigenetic information" or hereditary information not encoded in DNA sequences. It's a relatively new field of molecular biology.

When DNA is stored in the cell, it is packed up carefully. It's thought that methylation gives information about the DNA to tell information about what sort of info is on the DNA, how often to use it, or how tightly to pack the DNA, or maybe where exactly in the cell nucleus it should be stored.

DNA methylation is part of the solution to the problem of having genes very similar but organisms very different.

Epigenetics is being recognized as an increasingly important area of research that involves an understanding of the molecular mechanisms that influence the phenotypic outcome of the genome without alteration of the DNA sequence. These effects are mediated by the covalent attachment of chemical groups to DNA and its associated histone proteins. Such modifications, including methylation, acetylation, ubiquitination, and phosphorylation, often result in the alteration of gene expression levels that determine cell fate. Epigenetic marks are somatically inherited and therefore can be passed on as diseased cells replicate.

Thank you, Willow! I will try to dig into that information. I remember a NOVA show on epigenetics several years ago, I think, which showed how environment and experience could modify genetic instructions via the modified copies of the DNA called epigenetic material. Did I get that right?

that's probably close to right. we didn't talk a lot in my classes about how epigentic info was modified except during meiosis. however I believe environment and happenings can modify genetic instructions... either through a traditional mutation (changing the DNA sequence) or through changing epigenetic info (such as methylation patterns).

The DNA with changed instructions (either because the DNA itself is mutated in the strand itself, or because the info ON but not part of the DNA, has changed... epi- meaning "on" or "upon", and referring to histones, methylation patterns, and other info that is not located on the DNA strand itself but is part of the packaging upon and around it) can be part of mitosis and result in more cells with similarly-changed instructions.

This can either be a part of normal development as differentiation takes place and cells learn what tissue or organ they are to become, or it can be part of a cancer or other disease when there is a wrong change that takes place.

a methyl is a -CH3 group, and it must give different info based on what amino acid in the histone tail (which is a protein) it's attached to (and related to what other aminos are nearby), as this would affect what sorts of activating and silencing proteins could bind there.

I noticed Judy Mikovits talked about clearing XMRV from the blood supply by using the Intercept Blood System. I wonder if this is part of the "translational" research collaborations she's going to be working on. Here's a link to her Intercept Blood System & XMRV poster at the AABB Annual Meeting last October: http://www.interceptbloodsystem.com/documents/2010_AABB_Mikovits.pdf . And wasn't that what Dr Alter was talking about when he inadvertantly leaked the news from his paper?

Hi WillowJ, thanks. I put this together in a hurry, and didn't edit out all the bits properly - so the extra itp got in because I forget to delete that part of my notes. My notes were much more extensive, but I only mentioned the interesting stuff, and now its online for all to watch.